My baby died.

Ok, now that we have that out in the open, can we stop treating me like I have a communicable disease and want to give it to you? Stop ignoring or avoiding me, that just shows me that you can't get past it and don't want to work through your discomfort to help me. It tells me that you don't want to think that infant loss can happen, but it does. All the time. Seriously. Its not a disease, not contagious, you aren't going to lose your children by talking to me about mine. You think I don't want to hear about your kids? You are wrong. I want to hear about them. I want to know how things are going with them. I might blank out or shed some tears, but that's because I'm thinking about how I would love to have these things myself and I'm mourning the fact that I will never have them. You think that bringing up my little girl will hurt me? You ever think that I might want to talk about her? That since you talk about your kids, why can't we talk about mine? Have you forgotten that she lived? She was here. She lived and breathed for 20 days. She even got a social security card and insurance card! The government issued a birth certificate for God's sake! Why would I want you to forget she was here? You think its hard being you being around me when I'm dealing with this? How about putting on my shoes for a day. You wake up from a nightmare in which someone is trying to hurt or keep you from your kids, you have a baby that you know you are going to lose, etc, and you wake up scared to death. You can't even get out of bed to check on your toddler in the next room because your legs won't move. You can barely see because you are crying so hard, scared that someone is in there hurting your child. But you can't move. Finally, your body comes around and you can move again. You go into your toddler's room and pick him up from his crib. Something on the dresser catches your eye. Oh, damn, its her memory box. You think back to everything that you endured while in the hospital. Snap back to reality, now you have to go about your day, thinking about how things could have been, had your baby not died. Then try looking in your phone for someone to talk to. Nope, they don't talk to me anymore. Nope, they ignore my calls. Nope, they cut ties with me. Nope, they don't want to talk to me anymore. Notice a pattern? So you sit on the couch and think about what to do to fill up the day. You shouldn't sit on the couch the whole time, but you can't bring yourself to clean yourself up and go out. Where would you go? You don't have money to spend, you'll run into people who don't know what happened and only say insensitive things "Its for the best. She's better off this way. Everything for a reason. She would have had major issues. You can always try again. You are young. Its not like she really lived." etc. You don't have people you can visit because they don't get it or just don't want to hang around you. So you stay home. Going to the park means you have to chase around a toddler who just wants to run and you don't even have someone with you to help or even talk to. So you chase your kid around the house and notice something from when you were in the hospital and flash back to those days. Remember, you have no one to talk to because they basically ditched you and the only person you feel you can open up to 100% is at work.

Sounds sucky huh? So think about it like this. You avoid me, I'm going to count you out of my life. I'm tired of people treating me like I'm the elephant in the room. I've gotten to where I don't care if I make others uncomfortable. I want to talk about my kids, just like you. Just because I never got to bring her home doesn't mean she is nothing. She was my everything for those 20 days. I formed my life around her (and tried to around Anthony, but that wasn't the easiest).

By the way, I have my own problems. I have guilt that I didn't spend enough time with her. I wasn't by her side the whole time I was in the hospital. I could have been in there far longer until they booted me out and gone back in soon after going to eat. I should have been there more, insisted on giving a sponge bath at least one other time. Read to her more, talked to her more, decorated her isolete, something. I didn't get the chance to. I thought I had more time. The rug was yanked out from under my feet. I LIVED at the hospital and was living on 3 sets of clothing the whole time (until Adam came down with more) and I only had a single pair of ratty old flip flops that I had to wear almost the whole time. I was on my feet so much that my ankles were as big as softballs, almost as big as cantelopes. I only went back to the Ronald McDonald house to sleep and shower. As soon as I was up, I pumped, showered, and drove to the hospital. I wouldn't go home until about 11pm, if not later. I would be there 14 hours a day. And yet I feel I didn't spend enough time at her bedside. I know she loved me being there, but it was so hard, seeing her hooked up to those IV lines and ECMO. Knowing that others in the room are getting to hold and nurse their babies, I had to come to terms with not getting to hold her for a long time. August 1 (day before we let her go), the staff had put up new "Kangaroo Care" calendars for the nurses to mark off when momma got to kangaroo (skin to skin contact with baby on your chest). HOW CRUEL. I couldn't and probably would never get to kangaroo my daughter. At that point, we knew her heart was starting to fail, along with her kidneys. She was painfully swollen to the point her skin had a sheen to it. The tissue in her skin was breaking down from her not being able to pee off the extra fluids, but with failing kidneys, you can't pee nearly as well. When she died, we weighed her and found out that she had gained 4 lbs. 4 lbs of fluid on her poor little body. She was only 8 lbs at birth, so 4 is a LOT for someone that size. I'll never forget how heavy she was when they put her in my arms again before we pulled her vent out. I wasn't ready to feel that change at all.

Now how uncomfortable do YOU feel. Here I am, living a parent's worst nightmare. And having to do it quite publicly. Want to know something even more messed up? My husband isn't able to grieve logically either. He has people asking how I am, not even bothering to realize that he lost his little girl too. He lost all the hopes and dreams that she represented. He lost a part of his heart and soul too. Ask him how he's doing first. Worry about me after he's told you how he is.

Yes, we are in therapy. Guess what? That isn't going to make the pain go away. Nothing will. So get over it and rather than worrying about your comfort or saying the wrong thing, stop avoiding us and ask us how things are going. Don't freak or freeze.

My baby died, yes. But I'm dealing with it. Don't try to heal my broken heart, but don't try to make me forget her. I just might hit you if you do.